The last few weeks haven’t been very good. Her hemoglobin and platelet numbers have been way down. She is borderline neutrapenic and has had lots of bleeding. She has had either a nose bleed or her gums have been bleeding almost everyday this week. She is coming to the end of her protocol and her numbers should be much higher. It doesn’t seem like the drug therapy is working.
Nora has a pretty big week coming up. Tuesday she will be going to he clinic to get lots of platelets because on Thursday she will be getting a bone marrow aspiration to see if her body is making marrow. They will drill into her hip and take a liquid sample.
We are going over our treatment options. If she is making marrow, we will continue on the therapy for a few more weeks. If she is not making marrow, we have to make a decision whether to redo the AGT/Cyclosporine/Steriod/Neupogen drug therapy again, which means another 6 to 9 month regimen of shots, blood and medication. OR do a partial match transplant.
There is someone who meets the minimal requirements to Nora in the marrow database. He/She is a partial match. Which means if he/she passes the screening process, and Nora is healthy enough, we may go ahead with a transplant. We need to weight all the risks/reward associated with a transplant. A partial match is very risky as her body could reject the donor’s marrow. We were hoping that by now we would’ve found a 100% match, unfortunately that isn’t the case.
With a transplant she will have to go through chemotherapy and all the side-effects that go along with that… she will have to be in the hospital for a month or more. If she successfully en-grafts the bone marrow she will have an additional year of recovery.
Either way, she’ll most likely be home from school another year.
Stony Brook does not do pediatric bone marrow transplants so we will have to find a transplant center in the city. We are leaning toward, NYU, Columbia or Sloan. We will meet with all the potential doctors and see the facilities before making that decision.
I know lots of you guys have been calling and I have been horrible at calling you back. I apologize wholeheartedly. Somedays the thought of repeating the same story — instead of just keeping in the present by playing with Nora — just drains me. I love you all for calling and caring and I wish I knew what you could all do to help… we are just a little overwhelmed at the moment. Please forgive us. Because we really cannot thank everyone enough for all you have done for Nora. Everyone who has given blood. Everyone who has swabbed to try and be her marrow match. Everyone who has put together blood and bone marrow drives. Everyone who has donated money so we could get over 300 people swabbed and on the registry. For everyone still putting together drives, collecting money and running fundraisers. We are so blessed to have you all in our lives.
Thank you to everyone who has given time and their resources help Nora. ESPECIALLY the people at the Mastic Beach Property Owners Association who handle all the headaches the “Friends of Nora Getchell Foundation” constantly babysit so Shawn and I don’t go insane, and care for our whole family on a daily basis. We don’t know what we would do without such warm and wonderful people as our neighbors and friends.
Upcoming Drives & Events:
December 13th there is a blood drive at Innovation Stone in Nora’s name 130 Motor Parkway Hauppauge, NY 11788 Phone: 631-273-4445.
December 22nd there will be a blood drive at the Mastic Beach Property Owners Association 31 Neighborhood Road, Mastic Beach NY 11951. While all walk-ins will be accepted, it is highly recommended that you schedule an appointment time for your donation. For questions regarding eligibility, please call 1-800-668-0900 for all other questions or to schedule a donation on the 23rd, please call Tim at (631) 852-1300.
January 21st Islanders vs. Hurricanes call Cheryl at RPW 516-901-8462 for tickets. Lower level: $75 Mezz. level: $50. Proceeds from the game tickets go to “Friends of Nora Getchell”.
January 28th Bone Marrow Drive and Breakfast at Applebees in Shirley sponsored by RPW. Get tickets http://www.wantickets.com/Events/97140/Nora-Getchell-Foundation-Breakfast/
February 4th there will be a blood and bone marrow drive in Maine at Maranacook Community High School in the Music Room, 2250 Millard Harrison Drive, Readfield, Maine. 04355
What we need now are prayers. Lots of them. We need our Christmas miracle.
Shawn, Maureen, Arik, Nora & Nugget